I've read conflicting recommendations when it comes to exercise. I have 2 cavs, 1 thalamic, 1 pons. Lately, I'm experiencing nausea during workouts and post exertional headaches lasting hours. I certainly don't want to take any unnecessary risks but also don't want to give up something that's so important to me. Any input would be very much appreciated!

Exercise is such an individual thing with CMs. My son loves to lift weights and is able to do so safely within a few parameters (he has to be careful to use good breathing technique). Other people experience symptoms similar to yours. Sometimes they find that if the back off for awhile they can pick up the intensity later with fewer problems. Others don't. Be careful not to do exercise that may increase the pressure inside your head. (They sometimes do yoga at my son's school- he couldn't do the poses that had his head lowered below his body). The main thing is to listen to your body and check with your doctor if you aren't sure.

Best wishes,

Michelle

18 year old son with brainstem CM resected in March 2010, CM at C2-C3,CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)

Exactly what Michelle said! Every person is different. You have to work within the parameters that feel good to you. Those two locations are places that you do not want a bleed...so be careful and listen to your body for sure. My doctor gave me no limitations but I got really sick with intense exercise every time I tried after my bleed. I used to love to do kickboxing and intense exercise... Now I walk. after several episodes following exercise.

Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com

Sometimes I think we are all quick to point to our angiomas as the culprit for any unexplainable mallady. If I had too much fatigue or a headache, I would immediately suspect my angiomas. I'm sure they are not innocent in my physical issues, but I've learned to work through all the symptoms of other basic problems before I blame my 30+ angiomas. I had recently realized that most of my headaches were actually from dehydration and a crummy pillow. So when I fixed that I had less headaches and I just felt less angry about my physical issues overall.

I love working out, and yes I get nausea, dizziness, and evening long headaches too. But so do many people who don't have angiomas. I don't know what your nutritional regimen is like, but those could very well be the symptoms of dehydration, overexertion of weak core muscles, or food sensitives exacerbated by exercise. I have had to go to physical therapy to strengthen the weak muscles in my core because I had constant left flank pain and nausea for years. After neuro tests, CT scans, MRIs, gastro tests, ultrasounds, OB-GYN tests, they found nothing... and physical therapy was the last place to go. It has worked miracles. Nothing to do with my angiomas. It also has fixed my balance issues that I used to think were due to an angioma in my cerebellum.

Ultimately, I have no idea what your general health is like, and I'd be surprised if you found a neuro that could give you a straight answer about whether your angioma actually causes your issues. But it might make you feel better to try simple routes, like diet changes and different exercises, before blaming the angiomas and feeling like you have to mitigate everything around them.

Fatigue is probably going to be the biggest issue, and that is something that we can all improve on with better nutrition. I've found that when I'm symptomatic, my brain wants protein, fat, cholesterol, and simple sugars. And those are also good things for a workout even if you don't have an angioma. My brain is the first thing to suffer when I work out, so I feed it what it needs and I drink lots of electrolytes. I've found watered down blueberry juice to be the best; $5 a bottle a Trader Joe's.

Do you keep your electrolyte and water intake up when you workout? How is your form? I didn't know how bad my form was until I got lucky and found a personal trainer. He's just a free student intern at the school that I work for but he has helped immensely. But my bad form added to muscle pain, which then only gave me worse form or I'd compensate, and caused my core to weaken more, then led to nausea. It took me years to make these connections. And I just wanted to keep blaming my angiomas, hell I even have one hanging out in my liver that I thought could have some culpability.

You can go to your doctor and talk to her, and see what she says. But this is such a far off issue from the neurological system that most doctors will just give some general medical platitude because...they don't know. I'm of the camp that finds neuros to be mostly useless except for dispensing pills and ordering scans, so that's my bias. Maybe that's just where I lived.

It might be good to keep a journal of what you eat, what exercises you do, how much you drink, and list out your overall general feelings for that day. You might find a food allergy in there that you never imagined you had, and the exercise makes it worse.